An Adaptive Sports Expo: The United Spinal Association's Annual Kids Sports Spectacular

Max Wong and Lindell Lowe at the 2013 KSSOn Saturday, August 17^th, the United Spinal Association held their annual Kids Sports Spectacular in Philadelphia, PA. The KSS features adaptive sports clinics for kids with disabilities and their families. From basketball and baseball to hand-cycling and tennis, the KSS shows its participants just how active they can be in a variety of sports.

5-year-old Max Wong and his family made the journey from Queens, NY for their second trip to the KSS. Three years ago, surgery to remove a spinal tumor confined Max to a wheelchair. Despite the new challenges, Max’s family “made it their mission to seek out opportunities for him to be active.” By attending the KSS, Max got to try new sports and “bond with new friends and mentors—all living proof that the sky’s the limit when it comes to his abilities.” Inspired by the experience and the encouragement of those he met, Max has joined adaptive sled hockey and tennis clubs back home.

For this year’s keynote speech, the KSS invited Margaret ‘Maggie’ Redden, a U.S. Paralympian and Ms. Wheelchair New Jersey 2013. Maggie contracted polio as a child in India but has refused to let this disrupt her life. In line with KSS’s theme that determination and perseverance make anything possible, Maggie proclaimed, “Paralysis hasn’t stopped me from achieving.” No matter who you are or where you’re from, paralysis doesn’t have to stop you from achieving either.

Gavin Toney and keynote speaker Maggie ReddenTo read more about the United Spinal Association’s Kids Sports Spectacular, click here.

Looking to get involved in adaptive sport but missed this year’s KSS? No worries, check out the below links to find groups near you!

Boston area:

Spaulding Adaptive Sports & Recreation Program Website (Centers in Boston, Cape Cod (Sandwich, MA) and The North Shore (Salem, MA)

Access Sport America Website

For more info on how to participate in Access Sport America, contact Betty Miller at 978 264 0985 x 1192 or email Betty@AccessSportAmerica.org

Nationally:

Disabled Sports USA Website

Check out all the programs they offer and look for a Chapter near you!

There Is Life After Injury, Trauma Survivor Muji Karim Helps Fellow Survivors Cope

Karim meets with Celeste Corcoran, a victim who lost both legs in the Boston Marathon bombings (Photo Credit: Boston Globe)Muji Karim, a 29-year-old former all-star athlete, was seriously injured in a fiery car accident in August 2011. Both of his legs were amputated and most of his left hand was destroyed. Moreover, the injuries to his right arm left him without the full use of any limb. Karim felt extremely depressed and became very quiet until one day George Pessotti entered his intensive-care room at Brigham and Women’s Hospital in Boston. Pessotti, now a volunteer, suffered severe burns over most of his body from a kitchen fire in 1979. Encouraged by Pessotti, Karim set out on his recovery. His tenacity became well-known—he ate more protein than doctors ordered to help his body rebuild and doubled prescribed exercises to increase his strength. As a result, he has made great progress. After the Boston Marathon bombing, Muji has served as a mentor to help console victims and he plans to take a peer-counseling course with the Phoenix Society to make his role with the support group official. In giving, he is building his own strength. “It’s making me feel better and more at peace,” Karim said.

Click below to read Chelsea Conaboy’s article in the Boston Globe:

Boston Globe: "Trauma survivor now action as a beacon of inspiration”

Brain and Spinal Cord Injury Research: The Needs for New and Reliable Funding, Efficient and Collaborative Studies

According to researchers Anita Buchli, Ph.D. and Martin Schwab, Ph.D in their new article, The Real Brain Drain: Unmet Neuro Therapies, more funding and efficiency are needed in the search for neurological disease and trauma treatments. As the numbers show, there are hundreds of thousands of people across the world living with spinal cord injuries and roughly ten times more with traumatic brain injuries. While there are clearly numerous human, social, and economic incentives to finding new treatments, or even cures, pharmaceutical companies are cutting back their research of these neurological disorders due to unsuccessful past investments. As the authors note, this “reluctance to pursue drugs for neurological disorders” is unfortunately happening “just as our understanding of brain plasticity has exploded.” Exciting new findings demonstrate that the brain and spinal cord appear to be “dynamic and adaptable biological systems,” sparking hope that they are more capable of recovery than once believed.

In wake of the pharma companies retracting funding for treatments, it may pay off to prod other donors whose incentives align with finding effective new treatments. One potential source could be insurance companies. Currently, an insurance company incurs $2 million in expenses a year covering one individual living with a spinal cord injury; clearly, they would benefit significantly with new treatments that improve recovery and lifestyle.

However, the authors realize that “we can’t just throw money and resources at the problem; we must use them wisely.” First, to increase efficiency and collaboration, they advocate for greater transparency and cooperation between researchers and clinicians. The current culture, where each side has it’s own data, information, and terminology, does not promote the necessary environment for effectively building on new ideas and discoveries. “When spinal cord researchers began organizing retreats and workshops to bring together basic researchers and clinicians,” say Buchli and Schwab, “they saw first-hand how little each side knows about how the other works…each side had a completely different language to describe the same scenario.” To smooth out these kinks, it would benefit all to create a concrete network uniting the research and clinical scientists

Second, trials of new drugs and treatments need to take a more narrow focus—with smaller numbers of patients allowing for more in-depth analysis of the data.  By conducting these pin-pointed studies that focus “on well-selected populations (with tens of patients, not hundreds) and concentrating on a few centers, such trials would cost a few million dollars rather than the $50 million or more needed for one large trial,” which seems to be the industry norm.

To ensure that spinal cord and brain injury treatments are adequately researched, we should heed the above advice to increase research and clinical efficiency and look for new, reliable sources of funding. Click this link to read “The Real Brain Drain: Unmet Neuro Therapies” as posted on The Christopher & Dana Reeve Foundation’s website.

O.J. Brigance: A Man of Inspiration

As the Baltimore Ravens prepare to take on the San Francisco 49ers tomorrow in Super Bowl XLVII, they’ll find their inspiration in one member of the organization you may not have heard too much about. O.J. Brigance, the Ravens’ Senior Adviser to Player Development, is currently suffering from ALS—also known as Lou Gherig’s disease—but he’s not letting the disease prevent him from making those around him into “better men.” O.J., pictured above with his wife Chanda, can no longer speak and only has movement of his eyes and lips. With the help of a specialized computer that translates his eye movements into words, O.J. is able to communicate with others and continues to work full time with the team.

According to O.J., better known to his teammates as “Juice,” “When people say I inspire them, it encourages me to continue to persevere through this light and momentary trouble. I realize that what I am enduring now is not only for my development but to also be able to help those dealing with the same issues.” Despite the daily challenges he has to overcome, O.J. still feels “…blessed to have the opportunity to serve God in this current state.” On top of his job helping players with whatever issues their dealing with, O.J. strives to help others living with ALS.  Not long after his diagnosis, he founded the Brigance Brigade to provide resources for those with ALS to purchase the expensive equipment they need.

In Coach John Harbhaugh’s words, “[O.J’s] a shining light in the building, and we all definitely are energized by that.” No matter who you want to win tomorrow’s game, we can all root for Brigance and be inspired by his determination to make a difference.

Check out Bob Glauber’s “Newsday” article on Brigance here: “O.J. Brigance inspires Ravens as he battles Lou Gherig’s disease.”